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Royal Brompton families praise children’s respiratory care

PRESS RELEASE

Monday 19 November, 2012

An independent report commissioned by civil servants as part of a review of children’s heart services in England, has revealed serious concerns about plans to close Royal Brompton’s children’s intensive care unit. The report, commissioned by the London Specialised Commissioning Group (LSCG), asked for the views of patients and families currently using respiratory services at the hospital. It reveals strong support for the expert care currently available at the hospital: “Young people unequivocally felt that the changes were not desirable,”[1] and “The overwhelming majority of (adult) interview and focus group respondents did not want to see the paediatric intensive care service discontinued at RBH”.[2]

Those involved in the engagement exercise expressed a consistent view that they are highly satisfied with the specialist treatment at Royal Brompton; that they trust and have confidence in the specialist expertise and knowledge of staff; and that they do not want to seek care at alternative hospitals.

London commissioners asked OPM (Office for Public Management) to conduct the research after clinicians in the UK and internationally voiced concerns that taking away intensive care and anaesthesia from Royal Brompton, as part of a programme to reduce the number of centres offering children’s heart surgery, would have serious knock-on effects for children with serious respiratory problems.

The Cystic Fibrosis Trust and Asthma UK were among a number of charities and international organisations that made public their concerns that the impact of the planned changes had not been thought through.

The OPM report shows that patients and their carers place high value on the knowledge, expertise and continuity of staff at Royal Brompton; the holistic and joined up care offered on one site; the hospital’s quality and safety record and the crucial role played by research.

According to the report; “On the whole, parents felt that the closing of the PICU at RBH was the start of a ‘slippery slope’ leading ultimately to the slow decline and eventual closure of all respiratory services at the RBH.[3]

Concerns about the impact on research are also evident: “Many of the participants in interviews and focus groups felt that a key impact of the removal of the PICU would be dilution and loss of the research carried out at RBH…patients and parents highlighted the benefits of having research at the RBH in terms of access to the latest innovative treatments and therapies, quick and effective links between clinical research and care/treatment, improving the expertise of clinical staff…and ease in ensuring cohort participation in research….parents said they thought cutting edge research was a key part for recruiting and retaining excellent clinical staff and this could be lost under the proposals...”

The engagement exercise gave families just three weeks to get involved and parents voiced concerns that respiratory children were being treated as second class citizens – suffering the unintended consequences of plans to reorganise children’s heart services: “Parents felt that their children were being discriminated against in comparison to the families affected by the cardiac review which had a significant, longer and formal consultation process. ‘We don’t want the RBH to close, but if the NHS hasn’t been swayed by the views given so far, then they have an obligation to put down how they propose to deal with patients affected, and then they need to go to a consultation on this, before the decision about cardiac surgery’.” [4](parent)

Comments published in the report include:

“If the PICU is moved it would definitely endanger lives…. the RBH is a rare hospital to be able perform to such a high standard and therefore it should be left alone to be able to successfully continue to do so.” (parent).

“The doctors at the Royal Brompton have lots of experience whereas at the local hospital they don’t know about medicines. It makes it harder to speak on the same level. People at Brompton do – because it’s a hospital that deals with asthma and respiratory problems it makes it a lot easier, they’ve got all the recent equipment there, it’s much better because it’s specialised.” (15 year old patient).

“We believe it is crucial… that every child has access to doctors and nurses with the best specialist skills and access to the latest innovative treatments and therapies associated with cutting-edge research.” (Asthma UK).

“Based on our experience of bronchoscopy, and intravenous antibiotics – where are they going to get done without a PICU? Is she going to be transferred between hospitals for this? It will be disorientating and confusing for children. Will the hospital know about the cross infection issue? If they are at a general hospital they won’t know.” (parent)

“The fact that we have this support from the RBH means that parents can manage the care of children at home who would normally need care at a High Dependency Unit level (e.g using ventilators).” (parent)

“There is no guarantee that if the team leaves they would stay together and all of the experience and research they are doing/have done may be lost.”

“Having it all in one place is important. With the operations you know you’ll be coming back to a safe place, nothing big is going to change and there will be no new doctors or nurses. You know that they will be there – it’s a good feeling because you know you’re safe. I know that if I deteriorate they will be able to make me better quite quickly.’” (12-year-old patient).

Ends/

Notes to editors:

1. As part of a rationalisation programme, a committee of Primary Care Trust chief executives decided (on July 4th 2012) to end children’s heart surgery and intensive care at Royal Brompton hospital. This will in turn destroy Royal Brompton’s world-class paediatric respiratory service, which specialises in the treatment of children with cystic fibrosis, severe asthma and a number of other severe and complex respiratory conditions. Without the back-up of intensive care and on-site anaesthesia, Royal Brompton clinicians will not be able to undertake the more complex specialist treatments they do now, because they consider it unsafe to do so.

2. Royal Brompton’s respiratory teams also undertake groundbreaking research into important areas such as cystic fibrosis, severe asthma, lung disease, inflammation of the airways and neuromuscular conditions. The research they undertake can only be carried out at a specialist hospital, where the combination of clinical expertise, the type of patients seen and the number of patients seen, provide the necessary conditions. Without a children’s intensive care unit and on-site anaesthetists, Royal Brompton hospital cannot offer the type of specialist respiratory care it does now and its respiratory consultants will seek work elsewhere. As a result, the expert teams that are responsible for both clinical care and research programmes will be broken up.

3. Royal Brompton & Harefield NHS Foundation Trust is a national and international specialist heart and lung centre based inChelsea,Londonand Harefield, Middlesex. The Trusthelps patients from all age groups who have heart and lung problems and is the country's largest centre for the treatment of adult congenital heart disease.